exploring the awesome in autism

One of the topics
that seems to come up regularly when talking with parents and caregivers of
Autistic kids (or likely Autistic) is a disapproval of labels.
"Oh, we don't believe in labels," they exclaim. I understand. No one
wants to envision their child being held back or inhibited from leading a
wonderful and full life. And some fear the unfortunate and incorrect negative
stigmas associated with Autism.

To rehash my story
from my last post, I was not diagnosed until age 33. I lived my whole life
thinking I was "normal" (despite all the tests, and doctors, and
never fitting in, or having a single friend until high school, the anxiety, the
depression, etc.), but there were no answers that described me back then. In my
mind, therefore everyone else must be dealing with what I was dealing with and
I was a failure because I couldn't cope, because I didn't fit in. I lived 33
years of my life feeling like an utter failure. Sure, I could talk and drive,
but inside I felt I was very broken. I spent many years depressed and at times
passively suicidal. I didn't have many friends. I was fired from jobs I was
able to get (the topic of another post). Being misunderstood (and sometimes
humiliated) for so much of my life wreaked havoc on my self-esteem. I was
devastated by disapproval.

The diagnosis
changed my life. To call it profoundly transformational would be a gross
understatement. Finally I had answers for all of my struggles and I could start
working on mitigating and finding coping strategies. I started learning about
who I am, learning self-awareness, and self-kindness. But equally as important,
I could start to understand my strengths and gifts and talents. I had never
felt good at anything in my whole life. I really strained to see what value I
provided to the world, and the bad usually overshadowed the good. But with my
new knowledge, I started to see myself in a whole new light. Acceptance and
self-awareness is the first key to providing a better life for Autistics, and
that awareness opens the door to tools to manage, among other things, the
intense feelings that come up when overloaded by the outside world. And the
knowledge can help you better help them discover their strengths and gifts and
talents and how to pursue them.

It is also worth
noting that it is estimated that upwards of 50% or more Autistic children elope (wander off). Even more scary, it is estimated that over 90% of
Autistic child deaths are due to drowning after eloping. Autistic kids
don't have the same cognitive understanding of danger and their own welfare.
They can also have low muscle tone, low coordination skills, and lack of muscle
control. And yes, while not a primary indicator, decreased understanding of
social norms can cause isolation, and quite frequently bullying. Knowing this
type of information can help keep your kids safer, healthier, and happier.

A label will also
help you better understand your child's behavior. Autism is not a psychological
problem, it is a neurological difference. When Autistic people melt
down, we're not giving you a hard time, we're having a hard time. By having
awareness of this critical concept (along with many others) you can have more
compassion for their struggles and help them through their struggles more
effectively.

But the best part
is, you don't have to tell anyone! You can use the new knowledge and
information to improve the life of your Autistic loved one, and no one has to
know. Granted, the more people who know, the better support your child can
receive, but if you are worried that a label of Autism is going to more
negatively impact their life than not knowing, don't tell anyone.

By not getting a
"label" for fear of negative outcomes, you are choosing to hide who
your child is and ultimately by doing so creating those same negative outcomes.
By seeking answers you can bring relief and healing, and, in some instances I have
seen, even across multiple generations.

There was a thread
on a Facebook group tonight with a parent touting that their child had been
cured of Autism. As you might imagine, it quickly disintegrated into the Autism
Wars - parents who ultimately want the best for their kids, and Autistics who have
seen how “the best” can sometimes be “the worst”. Unfortunately, there are many
people without a proper understanding of Autism who grasp on to cures and
remedies and recoveries that can be more harmful than good because they are
attempting to fix symptoms, not the underlying differences.

The problem is
Autism isn't malaria or a cancer you recover from. If you are only looking at
Autism from what you can see, you are missing the 95% going on below the
surface. Autism is a neurological difference, a different wiring of the brain. For me, sure, I can cope and "appear normal", but I see the world
differently, I feel the world differently, I interact with the world
differently. I can make eye contact, but it is easier to stare at the floor and
have a conversation with you. I can also drive a car and run a business and
have beautiful relationships. Most people never think I'm Autistic. If my Mom -
a highly educated medical professional - didn't know better she would think I'm
cured too. But you wouldn't last 20 seconds inside my head. Some days I don't
even last 20 seconds inside my own head. We could talk on and on about delayed
maturity, low frustration tolerance, overactive fight-or-flight, sensory
overload, Autistic depression, communication, cognitive distortions,
prosopagnosia, proprioception, alexithymia, apraxia, misophonia, and so on, but
that is perhaps for another post or twenty.

That said, I also want to
acknowledge that it can be incredibly difficult being the parent of an Autistic
kid. I know. There are days you wonder if you will survive, if they will be
able to take care of themselves as adults, what their future will look like. Will they graduate high school? Be able to be independent? There's
fear and anxiety and worry and doubt. Did you do enough? The right things? And to top it off, there is a serious lack of information and resources, and most that do exist are wrong (the topic of another post) or far too expensive. So when someone brings hope of a brighter
future for them, absolutely we want that.

I am also Autistic
myself, and not diagnosed until age 33. I lived my whole life thinking I was
"normal" (despite all the tests, and doctors, and never fitting in, or
having a single friend until high school, the anxiety, the depression, etc.), but there were no answers that
described me back then. In my mind, everyone else must've be dealing with what
I was dealing with, and therefore I was a failure because I couldn't cope,
because I didn't fit in. I lived 33 years of my life feeling like an utter
failure. Sure, I could talk and drive, but inside I knew I was very broken. I
spent many years depressed and passively suicidal. All of the "don't do this", "do that" surely helped me interact with the world better, but it didn't do anything for my inner world that knew all too well that I was different. In fact, it made it worse. I was more of a failure. More of a screw-up. Getting my diagnosis and
learning about who I am, learning self-awareness, self-kindness, and coping
skills, that is what changed my life. Acceptance is the first key to
providing a better life for Autistics.

Getting someone to
the point where they're more societally acceptable is a great goal,
and it will make life easier for them to be sure. I enjoy learning new techniques and skills. But
that should not be the primary goal. Their happiness is, and that happiness first
stems from self-awareness and self-acceptance and self-kindness. We cannot
dismiss Autism as a disease to be maligned. Autistic people need support
systems and coping strategies because Autism is for a lifetime, stiming or not.

In the end, we all want the same goal - parents, teachers, healthcare professionals, and Autistic individuals: a bright future and happiness. Our place in the world. Our chance to be successful.

That said, if you have found a way to miraculously rewire entire brain
neurobiology, I will personally hand you your Nobel Prize.

Among all the literature and books and articles it is well-documented that those who are Autistic tend to have a special interest, and I am no exception. For me, the interest has changed many times over the years, from trucks, to computers, to philosophy and intellection, and others along the way. Since my diagnosis though, my special interest has become Autism itself. In the 34 months since my diagnosis, I have read countless books and articles, seen therapists, and talked to countless parents, educators, clinicians, and Autistics. Of all the answers that finally made sense of a lifetime of struggle, I could never come to terms with one prominent diagnostic criteria: I should be void of empathy, as though Autistic folks should be emotionless and distant monsters that should be feared.

Certainly we know that Autistic individuals experience meltdowns and negative emotions. And if they experience negative emotions, are we therefore saying they lack solely the basic, positive emotions like love? That sounds downright sociopathological. I mean, if a lack of positive emotion were to be the criteria, I have not met a single Autistic individual who would actually be Autistic. I remember giving my whole allowance one summer, which I was saving for a toy truck, to help needy kids in Africa because it broke my heart to think they didn't have even basic food and water. I remember in middle school wanting to start a youth center because I didn't want other kids to get bored and into trouble like I did. It was empathy that stirred me to help the anti-trafficking movement. It was empathy that started GeekGive; a desire to give back to those less fortunate. It is empathy that leads me now to create a successful workplace for others who have tremendous and valuable gifts and talents, yet face upwards of 80% unemployment.

After intellecting on this issue for some time, I realized that the empathy issue was overgeneralized. Quite simply, what the rest of the world is content to simply call "empathy" is really two distinct and unique skillsets. The first is external, social empathy, and it is the ability to look someone in the eye, give and take in conversation, show the correct facial expressions, know when to nod versus verbally acknowledge, and carry the correct and expected body posture, among other things. Those who are Autistic can be quite lacking, sometimes severely, in these skillets. I personally find small talk tedious and would much rather jump to the heart of the conversation that gets my brain whirring.

If we stop the story here at external empathy and say Autistic individuals lack empathy, we might be somewhat correct, but we would only be telling half the story. The other half of empathy is internal, compassionate empathy, and this is where Autistic individuals shine brightly. Some theorize this is a result of issues with emotional regulation, and that is a topic for another post, but everyone I've met has big, beautiful hearts full of compassion and love and care and concern, even if they don't always know how to express it to others and loved ones. Likewise, I know of many Autistic individuals who actively avoid the news because of the intense negative emotions it - as intended - can create. Recently, for example, I read about humanizing new programs to help chronic homelessness and I cried. I can feel the despair, the invalidation, the thought of living life without hope. I have lived many years without hope. And I can equally feel the hope and pride in being validated as a human being.

The third variable in understanding Autistic empathy is to recognize that many Autistic individuals have a condition known as Alexithymia, which is difficulty understanding and identifying, let alone explaining, their own emotions, making it equally difficult to explain them to others. To someone without an insight into dual empathy, this can also contribute to the idea that Autistic individuals lack emotion and empathy.

While Autists may be lacking in the social graces, they are not lacking for compassion. Even when it appears invisible to the outside world. It is time to de-generalize the empathy issue and understand it for all it's wonderful and sometimes messy complexity. Indeed, the above graph could now be redrawn as followings, keeping in mind that everyone is different, and the actual levels will vary by individual:

One of the beautiful facets of Autism is, while the social empathy may be lacking, the compassion more than makes up for it. I for one would much rather enjoy a world where people are kind and compassionate and possess internal empathy than one where everyone is adept at small talk.

I was diagnosed with Asperger's in May of 2012, after a lifetime of struggle, in what has become a pivotal life event. Perhaps the best way to explain my life prior is in three parts:

I Assumed I Was NormalI mean, I didn't feel normal, or fit in, or reciprocate my mother's embrace as an infant, or have a single friend until middle school, and I've spent 80% of my adult life since age 16 entirely alone, but for all the doctors and batteries of tests and blood work and wires and at least a dozen different medications across much of my childhood, not a single answer was revealed to indicate I was anything but normal. Well, there was that one doctor who saw me for 10 whole minutes and then rushed out the door for vacation and in passing told my Mom I might be schizophrenic when I was older. Schizophrenia is a common misdiagnosis for Autism.

And Therefore Everyone Else Dealt With What I Dealt WithVisual, auditory, and tactile oversensitivity, literal black and white thinking, cluelessness to social graces, my back against a stone wall on the playground in elementary school with my hands over my eyes because it was so bright, an instant fight or flight anxiety response when a high pitched voice talks over the TV show I'm watching...

And Therefore I Was a Failure Because I Couldn't Cope As WellI started speaking before my first birthday, was reading a few dozen words and doing basic math by age two, and tested a generous IQ during elementary school. Clearly it was a character defect. Perhaps I was defective. Inferior. Less...

To say the diagnosis was transformative and redemptive and life changing would be to devalue those words. Suddenly, instead of being a complete failure, I was remarkable successful in what I had been able to overcome and achieve. I read through Dr. Tony Attwood's "The Complete Guide to Asperger's Syndrome" and highlighted what felt like half the book. I learned about and recognized my own sensory issues for the first time, including auditory, visual, taste, and tactile. I learned about my weaknesses and was able to start learning how to become aware of and compensate for them. And I learned about my strengths and how I could better cater to them.

As I read through many other books and literature on Autism, however, I was discouraged to find so much negativity and fear and despair, use of the medical model, of being broken and needing to be fixed. To use the medical model to describe Autism is wholly incorrect. There is nothing broken. Quite frankly, to even consider fixing (read: curing) Autism seems tantamount to trying to cure being left-handed, or musical talent, or vision. To be clear, we should not dismiss the unique struggles that Autism can present to individuals and their support systems, but as Temple Grandin says, we are "different, not less", and through a better neurological understanding of Autism, a lot of those struggles can be mitigated or lessened very early. The strengths, on the other hand, are extraordinary: high intelligence, intense focus, attention to detail, creative out-of-the-box problem solving skills, honesty, and loyalty; strengths that, given a proper support system and perhaps a little extra help, can far outplay any weakness.

To tie this all together I want to tell you about Albert Einstein. I recently read "Einstein: His Life and Universe" by Walter Isaacson. In it, the author tells of Einstein's move to America and of his work at Princeton University. What the author leaves out is that Einstein used to go for walks and get so lost in thought that he wouldn't be able to find his way home. It was a bit of humor in Princeton that one might have to help Einstein, one of the most highly regarded intellectuals of his time, find his way. Eventually, Princeton University hired an assistant for Professor Einstein to act as a handler of sorts. When Einstein would walk into a store, grab a pad of paper and a writing instrument and mindlessly walk out while jotting notes, his assistant would handle the bill at the register. Ultimately, if Einstein needed a little extra support in order for him to do the monumental work he did, I dare say no one would question giving it to him, and no one would talk of curing him. The same is true for all Autistic individuals.

Through this blog, it is my hope to convey the strengths and hope and possibility and awesomeness that is Autism.